M.E. Patients and the Researchers that Silence Them

Shoes left during a Millions Missing protest, representing the M.E. patients missing from their lives

A lot of things have been written recently about patients living with Myalgic Encephalomyelitis (M.E.), often erroneously known as Chronic Fatigue Syndrome. Last week, Reuters published a long-form piece focused on psychiatrists working in the field, who claimed online activists were silencing their work.

Reuters quotes Professor Michael Sharpe, one of the authors of the controversial PACE trial, which was this year debated in Parliament, and is responsible for the current NICE guidelines that recommend Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) to patients.

“It’s just too toxic [a field],” he says, and Reuters adds their own context to the conversation, writing: ‘For many scientists, [this is] a new normal: From climate change to vaccines, activism and science are fighting it out online.’

As an M.E. patient and campaigner, the only things I felt reading those words were sadness and frustration. In my former life, before sickness struck, I trained and worked as a journalist, and the lack of research involved in framing severely ill patients as anti-science makes my heart ache; both for my former profession, and for the millions of patients given no right of reply.

Encouraging False Beliefs

There is a pernicious belief in the public consciousness and the psychiatric lobby, that patients are simply malingering, that M.E. is psychosomatic in origin, and that this is what the current research suggests. Indeed, in an inflammatory column in The Times this week, Rod Liddle says of Professor Simon Wessely, an adviser to the PACE trial, that ‘[He] finds it astonishing that [patients] would rather be the victims of a thoroughly nasty virus than a mental condition that might be gently assuaged by therapy.”

To a member of the public, unaware of current research, I’m sure this sounds conclusive, but it is also factually untrue. While Liddle says Professor Wessely believes M.E. to be a psychiatric condition, even Professor Sharpe disagrees, and is quoted in Reuters saying he believes the syndrome is a biological condition. With disagreement even among the researchers involved in the PACE trial, then, where are we to go from here?

I would suggest we start with the years of current research these articles left out. In a study published in 2015, researchers found errors in cellular energy production in M.E. patients, revealing that amino acids and proteins were being broken down at an accelerated rate. Another study in 2016 revealed significant decreases in metabolites, which led to a decreased metabolism in M.E. patients overall.

In the same year, Maureen Hanson’s team at Cornell found different kinds of gut bacteria in M.E. patients compared to healthy individuals, with blood markers indicating an elevated response to bacteria post-exercise, implying leakage of gut bacteria into the blood. A similar study the year before also found that certain bacteria increased in the bloodstream of M.E. patients after exercise, but not in healthy controls.

Numerous studies have revealed reduced blood flow to the brain and heart following exercise, reduced oxygen uptake in patient’s haemoglobin, and different gene function after exercise in patients, including in genes related to immunity, metabolism, and the nervous system.

These findings are crucial, because post-exertional malaise, the worsening of symptoms after exertion, is the cardinal feature of M.E. It is for this reason that patients so strongly object to the PACE trial’s recommendation of graded exercise as either a curative or a supportive treatment. Not only is it frequently not effective, it is often directly harmful.

An Avoidable Loss of Life

Merryn Crofts, who sadly lost her life to M.E.

To see proof of this, we need look no further than the sad case of Merryn Crofts, who at 21-years-old, last year became the second person in the UK to have M.E. listed on her death certificate. At the time of the Parliamentary debate earlier this year, her mum released a statement, saying:

“M.E. is not a rare disease; it affects 250,000 people in the UK, yet most people, including doctors, know very little about it. A common misconception is that it is about fatigue, but M.E. has so many other debilitating symptoms, ranging in severity. It commonly starts after some kind of virus.
“In the M.E. community, M.E. is referred to as a living death, Merryn’s hospice doctor said she had never witnessed such suffering.
“How is it possible in this day and age that so little is known of this illness and there is such a stigma attached to it, even amongst the medical community? We dreaded the collective eye roll at every hospital appointment if M.E. was mentioned, and comments such as, ‘there’s no such thing as M.E.’ or conversely, ‘she’s too ill to have M.E.’.”

This misinformation, encouraged by recent articles and enhanced by disagreements between the PACE trial proponents, has led to years of harm for patients. As Parliament heard recently, one in five children with the disease are threatened with being forced into care, with one eight-year-old ‘Girl B’ almost being taken from her family.

As the ME Association reported at the time, under threat of court action, the girl’s parents were forced to take her to a children’s hospital and threatened with the prospect of their daughter being taken into foster care. It was only when they sought the intervention of Dr Nigel Speight and the Young M.E. Sufferers Trust, that she was allowed home and removed from the ‘at risk’ register.

Under these circumstances, in which patients are left without medical support for a complex, multi-system illness, and parents are threatened with the loss of their children if they don’t comply with harmful treatments, it is understandable that patients would object to more psychiatrists entering the field. And what recent press coverage has left out of this debate, is that the findings of the PACE trial have been widely condemned, not just by patients, but throughout the medical profession as well.

Valid Patient Concerns

Last year, over a hundred clinicians, researchers, patient groups, lawyers, and politicians signed an open letter to the medical journal The Lancet, calling on them to commission an independent analysis of the data from the trial. The letter stated that:

  • The behavioural treatments CBT and GET tested in the PACE trial, the results of which were published in the Lancet in 2011, were “based on the hypothesis that ME/CFS patients harbour ‘unhelpful’ convictions about having an ongoing organic disease and that the perpetuation of their devastating symptoms is the result of deconditioning.”
  • By contrast, a 2015 report by the US Institute of Medicine (now the National Academy of Medicine) makes it clear that the defining symptom of the condition is “a systemic intolerance to exertion; if patients exceed their available energy resources, they can suffer serious and prolonged relapses.”
  • A growing number of international health authorities, including the US Centers for Disease Control and the Dutch Health Council, have stopped recommending CBT and/or GET as suitable treatments for M.E.
  • Earlier this year, leading American clinicians who specialise in M.E. “unanimously agreed that the two PACE treatments are inappropriate and possibly harmful for patients.”

As a journalist currently side-lined by M.E., I am quietly horrified that these issues weren’t raised in either of the recent articles about campaigners and their families. Far from being anti-science, patients have been the driving force behind the chronically under-funded biomedical research that is taking place into this disease.

This year will mark the 14th International M.E. Conference supported by Invest in ME, which brings together researchers, clinicians, patient groups, and patients and their carers, to make progress in biomedical research into M.E. This month, two major biomedical conferences, the Emerge Conference in Australia and the NIH conference in the United States are being held, with the support of patients.

And in 2016, an information tribunal found that QMUL’s assessment of activist behaviour as “abusive”, was “grossly exaggerated”, stating that “the only actual evidence was that an individual at a seminar had heckled Professor Chalder”. This would seem, in context, perfectly reasonable behaviour, given that M.E. patients have been placed in the unenviable position of fighting not just for appropriate treatment for our illness, but for recognition of the current research that proves, beyond a doubt, that our condition is a physical one.

Next year, NICE will launch an official review of the current guidelines for the treatment of M.E., and with a Parliamentary campaign brought by MP Carol Monaghan now ongoing, it is clear the PACE trial authors are worried about the blow to their professional reputations should these guidelines change. As a patient, I can honestly say I have no interest in vilifying them, and I wouldn’t need to think about them at all, were they not so consistently centring themselves in the press at our expense.

Quite simply, what I, and patients like me want, is a commitment to biomedical research funding, an awareness among doctors that Graded Exercise Therapy, in particular, harms our chances of recovery, and for the stranglehold of psychiatric funding to end. We are not rabble-rousers, and nor are we anti-science; in fact, we are patently far more committed to scientific enquiry than the psychiatrists currently rubbishing us in the press. But we are also unwell, unheard, and unable to move forward with our lives until these attitudes change.

As Merryn Crofts mother says:

“More knowledge, education and awareness is desperately needed to stop the stigma, increase research, and stop the continued suffering of thousands of people with ME.
“My daughter did not die of ‘fatigue’. She died due to multi-systemic neurological M.E. and change needs to happen — now.”

We can’t wait any longer, and while the PACE authors struggle to cling onto their reputations, they do not compare to the millions of us still fighting for our lives.

· If you want to learn more about current research into M.E. visit ME Action, Action for ME, or the ME Association.

· To help us campaign for biomedical research funding and a review of the NICE guidelines, you can write to your MP, or join the Millions Missing protests in May.

· If you learn from my writing and want to help me do more of it, you can read more and support my work on Patreon here.